When a profession is dominated by women, one often finds its members are deeply concerned by issues that affect women and their children. Dr Joanne Potterton has devoted years of research to one such subject.

“Is your child able to choose her own clothes to wear each day if you tell her to?” the researcher asks the HIV-positive mother of an HIV-positive three-year-old girl.
The mother looks at Potterton as though she has come from another planet: “When I am sick, she must dress herself and make herself food.”

The researcher hurriedly moves on to the next question: “When you are shopping, if you ask her to fetch something from another aisle in the supermarket, is she able to do so?”

Once again, the look of disbelief: “When I am in the hospital, she must stay alone and go to the shop alone.”

Potterton, the physiotherapist who is telling the story, looks up from behind the podium. In the auditorium gasps can be heard: the audience is composed of physiotherapists in Bloemfontein for their biennial congress. In a profession dominated by women, many are or have been the mothers of toddlers and one can see the horror on their faces as they make the comparison between this woman’s life and their own.

One of South Africa’s largely unsung but distinguished female scientists, Potterton earned her PhD in this subject: the impact of HIV on children. But long experience has not made her immune to the anguish the disease causes in families – especially for the women who are, by and large, the caregivers: the mothers, wives, grandmothers, aunts or simply women whose nurturing instincts lead them to care for the sick in their communities.

More than a dread disease
Although a lot of medical research is being done around the world, there is very little, if any, similar research on the long-term outcomes for children living with HIV, a subject that is of vital interest to millions of mothers in South Africa.

It took a woman – and a mother of small children – to ask the crucial question: Could being infected with a disease like HIV when you are a baby or toddler have an impact that will linger or even affect you throughout life? Should we be doing more for our children than just giving them life-saving drugs?

Until relatively recently, a child born HIV positive had a bad prognosis: he or she was expected to die within two to four years. The focus for many healthcare professionals and activists was on ensuring that pregnant women got the drugs they needed to avoid giving birth to a child who had HIV. But although prevention of mother-to-child transmission drugs are widely available now, many children are still being born infected.

With advances in drug therapy these children could easily live into adulthood and beyond, so it seemed important to Potterton to investigate what the impact was of being infected in the critical years when a child is developing mind and body.

“There are upwards of 2.1-million children around the world who are positive,” she said. “There are 140 000 in South and Southeast Asia, about 31000 in South America, less than 100 in North America and 1.8-million in sub-Saharan Africa. So this is very much our issue.”

It is the citizens of sub-Saharan African countries – mainly Botswana, South Africa, Swaziland, Lesotho and their immediate neighbours – who have an urgent need to understand how this disease will affect a large percentage of the next generation.

The significance of Potterton’s contribution in pioneering this research has been recognised locally and internationally. As well as being a senior lecturer in the physiotherapy department at the University of the Witwatersrand, she is an adviser to the South African National Aids Council on paediatric issues. She is also on the human resources committee of the eagerly awaited Nelson Mandela Children’s Hospital due to open its doors in 2014 and a member of a special advisory panel on the psychosocial issues affecting children infected with HIV for the United Nations Children’s Fund.

“A ‘good outcome’ in children infected with HIV is often equated to a high CD4 count and decreased mortality,” Potterton said. “Few studies have looked beyond this clinical marker to establish what the health concerns of children infected with HIV are as they live longer, relatively more healthy lives.”

What she and her postgraduate students discovered, she said, was that “clinical impairments as well as activity and participation restrictions remain despite the children achieving acceptable CD4 counts”.

The long-term impact
What does this mean in layman’s language? Children who are born with HIV often receive medical care only when they are severely ill. That means the disease is ravaging them at a crucial time – when they are building their bodies and creating essential functions in their brains. Consider, for example, that a child has a window of only a few years in which the brain learns to speak and understand language or interpret visual signals.

What Potterton and her students have shown is that children with HIV who are placed on antiretroviral drugs suffer motor and cognitive (body and mind, in simplistic terms) developmental delays on which they do not simply catch up as their CD4 counts rise and are maintained.

“Despite having achieved clinically acceptable CD4 counts with treatment, the children in our studies still presented with developmental delay, even if they were on highly active antiretroviral therapy and even if they are very young,” she said.

“These children have decreased muscle strength – in one study, the children had half the muscle strength expected for their age – lots of respiratory disease and even delays in the area of sight. Children who were not on highly active antiretroviral therapy demonstrated severe delays. And the research repeatedly showed that these delays lingered for months and years after the children went on to the therapy.”

The implications are enormous. There is a huge tranche of children infected and living on life-saving drugs and one can reasonably extra-polate from the nine different studies Potterton refers to that many, if not all, of them have some kind of motor or cognitive delay.

With medical advances these children can expect to reach adulthood and beyond, maybe even live a close to normal lifespan. How do parents cope with such children? Is there anything they can do to help them to catch up on their development? How are schools coping when there are children in a class who are not at the same developmental level as their peers? Could schools implement programmes – of exercise, for example – that could help these children? What is happening in the playground when some children are less able and significantly smaller than others of their age? Are they bullied? Will these children be prejudiced in the workplace one day?

The important thing, said Potterton, was to recognise that the problem exists and tackle it with more than drugs. “We know, for example, that muscle weakness can be a problem in adults with HIV and we also know that targeted strengthening programmes do work for them, so this is one of the things we can do for these children. Multidisciplinary intervention programmes need to be developed urgently with more involvement from speech therapists and occupational therapists, because all facets of development are affected.”

As a start, it seems, healthcare facilities should screen children for developmental delays.